'Doctors told us to abort our disabled baby - but our son is proof that we were right to say no'

While he was still in the womb, scans showed he was unlikely to survive, and would be severely disabled if he did.

His parents Julie Crampin, 36, and Antony Lara rejected advice to have the pregnancy terminated, and Marco was born with a range of serious conditions, including water on the brain, a hole in the heart and pyloric stenosis – a narrowing of the outlet of the stomach.

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But the couple from Gloucester are delighted with their son and say he is making good progress.

Mr Lara, a 40-year-old hairdresser, said: "There was never a moment when we were in any doubt that we wanted him, even if he only lived for a day.

"Just to have had him alive for a few hours would have been better than not giving him the chance of life."

Marco's problems were revealed when his mother had a scan at 20 weeks.

Mr Lara said: "He was diagnosed as severely disabled. The chances of having him were minimal.

"We were told he could either be seriously disabled or die at birth, so we had big decisions to make.

"We were given the option of a termination, but we both became determined to have him."

The couple managed to find hope in daily updates from doctors which, although still desperate, showed Marco to be a fighter.

They were delighted when their faith was rewarded and their son was born, although they have twice been forced to cancel their wedding because of his medical needs.

Now Marco is developing well after three operations, two to relieve pressure on his brain.

Mr Lara said last night he is hopeful his son will live a full life without any serious disabilities – but it is too early yet for doctors to give them an accurate prediction.

"Considering we were told he would die within hours of birth that is a pretty good prognosis," he added.

"His co-ordination, eye movements and speech are all good. He's very smiley and alert. There is no reason to think he is going to have any particular disabilities but we really won't know more till he is about two.

"We live every day as it comes, not thinking about the fact that his life might be curtailed or that he will be disabled.

"At the moment, everything is looking good – so much better than we dared to hope when the doctors advised us to terminate the pregnancy.

"Naturally, Julie and I have our ups and downs with him and we've had some tears as well as laughs but neither of us have for a moment regretted the decision to have him.

"He may be a lot of work, but he is worth it.

"We didn't at any stage even con-sider having a termination despite the medical advice.

"We both knew we wanted our baby no matter what and we have not regretted the decision at any stage. We both agreed we would rather have him, no matter what, than not at all."

Now the couple want to start a support group for other parents who find themselves in the same position.

Mr Lara said: "Obviously the whole pregnancy was a very anxious time. We felt isolated.

"Prognosis and diagnosis were everchanging, but we were always getting the worst-case scenario.

"We have come across a lot of people who know someone who has hydrocephalus, or water on the brain.

"It is not just diagnosed at birth, it can develop through meningitis and other illnesses.

"We want to establish a place where people can meet and answer questions which the medical profession give us in medical terms."